E-patient Interview: Keith Schorsch

When Keith Schorsch began suffering from facial paralysis, fatigue, and severe muscular and skeletal pain, eleven doctors failed to identify the cause. Luckily, a friend recognized the symptoms as similar to what she had suffered when she had Lyme disease – and that’s the clue that saved Keith.

Keith turned his experience into a consumer call to action (and a business plan) by founding Trusera.com. Here is his e-patient story…

Tags: Baby Boomers Age, Consumer Survey, Facial Paralysis, Finding Health, Health And Wellness, Health Care Decisions, Health Consumer, Health Consumers, Health Experience, Huge Wave, Lyme Disease, Passive Role, Patient Interview, Patient Story, Personal Context, Personal Health Decisions, Schorsch, Skeletal Pain, Unmet Health, Wellness Issues

E-patient Interview: Sheryl Stein

May 1, 2008 · Filed Under e-patient stories, others' e-patient stories · 5 Comments

Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how “reaching out via the internet is now an ingrained habit in our world.” Jump in here…

Tags: blog, chronic disease, Common Variable Immunodeficiency, community, CVID, Delivery Methods, Diagnosis, Diagnostician, e-patient, Gammaglobulin Therapy, Health Care Decisions, Humor On, Immune Deficiency Foundation, Ingrained Habit, Listserve, NIH, No Doubt, Pamphlets, Patient Interview, Patient Interviews, patient networks, Pharmaceutical Company, Pros And Cons, Self Advocate, self-care, Whopper

E-patient Interview: Amy Tenderich

April 18, 2008 · Filed Under e-patient stories, others' e-patient stories · 4 Comments

Amy Tenderich is the engine behind DiabetesMine, “a gold mine of straight talk and encouragement for people living with diabetes.”

Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions about how she came to be such a kick-ass e-patient.

Tags: 99s, American Healthcare System, Asking The Right Questions, C Section, Collective Voice, Continuous Glucose, Diabetes Diagnosis, Glucose Monitors, Godsend, Gold Mine, Health Care Decisions, Health Insurance, Information Patients, Insulin Pumps, Kick Ass, Living With Diabetes, Patient Interview, Share Experiences, Straight Talk, Time In History, Type 1 Diabetes

E-patient Interview: Stirrup Queen

April 16, 2008 · Filed Under e-patient stories, others' e-patient stories · 9 Comments

Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT , heading over to Spicy Sister, then Lisa).

One of my favorite parts of the article was an explanation of this alphabet soup:

I am Tertia, I am 35 yrs old, dh is 30, TTC 4 yrs, dx = PCOS, stage II endo, irregular AF and I don’t O on my own. 3 x injectible IUI’s, all BFN. IVF #1 = cancelled due to falling E2’s. IVF #2, zero fert, rescue ICSI, BFN. IVF#3 = BFP, but ectopic, 3 x FET’s = BFN, IVF #4 = BFP, but MC 8w3d due to T21, IVF #5 = BFP, twins, loss of one at 21w, the other born 25w6d, died after 10 days in NICU.

If you squint this could be the sig line for an ACOR subscriber or other e-patient community member.

Another favorite outcome of reading the article was my reconnection with Melissa, creator of the blog Stirrup Queens and Sperm Palace Jesters, whom I met standing in the check-out line at Peggy Orenstein’s reading of Waiting for Daisy last year in DC. Melissa was kind enough to answer a few questions about being an e-patient, evaluating treatment choices, and combating stereotypes.

Tags: Alphabet Soup, Bfn, Bfp, Cheryl Miller, Community Member, Ectopic, Endo, Health Care Decisions, Iui, New Atlantis, Nicu, Patient Community, Patient Interview, Peggy Orenstein, Reconnection, Self Advocate, Squint, Stirrup, Treatment Choices, Waiting For Daisy, Waiting Rooms